Forgot the one picture that might be the most helpful!

OK, I did not realize that I did not include this picture. When I had my CT stat day I was his last patient. When I was done I went out in waiting room to get my Dad. Took a minute, he has bad back and knees. The guy came out and said “the last woman’s salivary gland was HUGE!!!” The girl at desk said “shhhh she is still here” he said “it doesn’t matter it is not what they are looking for”!!! The person that read the scan for the report SAID NOTHING about my gland or anyhting just that what they asked for was fine. I am not a Dr. or radiologist and this does not look fine to me. The pain…again, excruciating! Having infection leeching inside that tonsil/styloid pocket was he seeing my infection and not my salivary gland??? I am guessing this is important…one side is being seriously crowded. I can’t tell you how many times I either felt choked or passing our before bed and begging my husband to tell someone where the issue was if I die in my sleep. Also, I am 51…will this affect my recovery as in will it take longer? This stuff is scary to me! I thank anyone who helps with input!

Certainly not normal, I can’t believe that they didn’t comment on that in the report!

I was shocked as well and when I told my Drs this they did not believe me because they said that no matter what issue, if there is one, the reader will add it to the report. The report for this CT scan says NOTHING WRONG. But the bigger issue at play here is that a Dr, who disapproved of my pain meds regimen (ONE ONLY), flagged me in the system and everyone is all connected now and of course they are going to listen to the Dr. and assume that I am something I am not. This is ruining my life. The more I try to make someone understand the worse it gets. So, if I can see it and you, Jules, can see it, why isn’t it being reported and why does no one care??? I am super freaking scared about this. If I told some of the stories of things that the ER or a Dr has done to me because of this issue you wouldn’t believe it. Like the “swallow test” the ER down the road gave me which was a cracker and a paper cup full of water and the nurse left the room and I couldn’t even get the cracker or water down and he came back and said “see you swallow just fine.” That visit was the most humiliating thing I have been through…well, one of them.

It is so hard when you’ve been labelled in the notes, keep strong & keep on fighting your corner, hopefully you’ll get some treatment soon…thinking of you, hugs.

Thank you, Jules, I appreciate that very much. I feel like I am in the seventh ring of hell. Thank you.

dharmadel ~

YIKES!! that is pretty scary looking. I’m also appalled nothing was noted. I’d try to get an appt w/ the radiologist who read your CT scan & wrote the report or at least ask to talk to him/her so you can question what seems to be missing from the report. Your doctor should also be able to see there’s a problem that isn’t being addressed. It is possible the size of the gland is due to irritation from or infection caused by the styloid just as is the case w/ your tonsil. CT slices aren’t the easiest way for you (or us) to see your styloids & ligaments. If you can get 3D images that would be helpful. There is also a program listed on this forum for making CT slices into a 3d image. Use the magnifying glass icon to search - 3D slicer.

I’m sorry for all you’ve been through. I’ve forgotten whether or not you have an appointment w/ one of the doctors on the list from your state or if you’re planning to go out of state to get help. Sorry for my bad memory.

I saw the Neuro yesterday. I could tell from her reaction that they have known about this, obviously, because it is there. She said her and the other Drs don’t read images…no, they may not read them, but they know what is up! Maybe they did not understand why my symptoms were so much extra and when I told her about the infection that is growing or whatever it is an OH look went across her face. By the way, I remembered yesterday that my dentist had urged me to go to and ENT a LOOONNG time ago! Every time I got my teeth cleaned he would figure out a way to ask me that question, ask if I had migrane, etc. Kudos to him, but DANG if he could have just told me!!! In 2012 I started having SUPER symptoms which included projectile vomiting and dizziness and all of the Neurological issues. But I think I have more than one thing happening, and the Neuro agreed.

Back to the OH look…when I described the mass that blows up and pushes on everything she asked me if I have cryptic tonsils and I do. She asked if it could be a possible cyst that is enlarging and then bursting and I said that is exactly what it feel like. My GP at one time thought it may be a Zenker’s diverticulum but I could feel this up higher as well. I absolutely think it is a cyst that has an opening in my bermuda triangle of bone and tonsil.

She said she saw that my ENT had requested a re-read of my CT scan and measurements and when she realized that I am still sitting in the dark with no information she told me to call the number on the disk and ask for the re-read and measurements. L 4.1 and R 3.5, but nothing at all about how thick or other measurement. It also said a marker at L sub mandibular gland with surrounding inflammatory changes. At the time of CT the cyst or infection was not at it’s biggest. But I know my immune system was compromised because I had thrush for at least three months. (Liquid Nystatin is disgusting!) She was glad I was advocating for myself and told me to ask the ENT if he is familiar with ES and ask if he will shorten the bones. Sorry I don’t remember all of the medical jargon. She said that her Drs are very familiar with ES and if this ENT, whom she does not know, is not going to address the ES then she will send in a referral to Shands (sp?).

SO. Here is what I think. I have had migraine since I was five y’all. Is it possible I have had this my entire life? Regardless of that, the big ole mass of infection or cyst or whatever it is, it comes and goes as we can see by my face. But when it comes, it comes with a vengeance! And no, we are not Drs but we can all see that my insides are squished! I can feel it just sitting here and it is pushing on a bunch of stuff…even my collarbone hurts and it is affecting my breathing.

I feel like she was kind of not taking it as seriously until she realized what was going on with the cyst. And she kept repeating that after surgery when I go back for treatment that they only use anti-convulsant or similar type meds for the migraine and other issues I have (Dysautonomis, etc.). I don’t have issue with that! But I do have other issues and I do take one pain med and it is not something that can be fixed. I have been on the pain meds for 20 years, no abuse or required higher dosing…WHY do Drs mess with people that are functioning and not abusing??? It is extremely frustrating. And I can’t use medical marijuana, which the Neuro promotes big time!

OK, so, I cancelled my appt for Wednesday with my GP and I will be seeing the ENT so he can explain to me what he will be doing and if he has done it before!

I hope I didn’t forget anything…One more question…has anyone ever had an experience similar to mine as far as the hospital saying there was nothing wrong but there was? How do you get it into the system that there really was something wrong? Do I have to go to the hospital ER and talk to a rep? Is it just water under the bridge and they can continue to treat me like crap the next time I go in for any reason like they have in the past?

OH, how long did you all stay in hospital? If he takes out tonsils and takes care of bone length will it be overnight or…?

Also, I never did add that I too suffer from GI issues. GERD, dysphagia, they had to pop open my esophagus, mast cell issue found at colonoscopy.

I tried working with the 3D slicer and I can get my images on there but I am having a hard time with the 3-D model and the correct contrast! I am working on that…

Dang, I just realized what the Neuro told me was that if the ENT didn’t diagnose it and if he doesn’t plan to fix it or even tell me it is there that I have to call her back so she can refer me to Shands…so that means she didn’t give me an actual diagnosis? Is she wanting the ENT to do that? And where the heck do I stand if he still refuses to admit that type of issue??? ANY info or help anyone can give me is so appreciated!!! This is ridiculous.

Phew, alot to take in!
Firstly, presumably with the readings from the scan, your styloids are enlarged, & as you have symptoms of ES, then a diagnosis of ES shouldn’t be a problem. When you see the ENT, you can tell them that the Neuro has seen this report, & from what you say- that her team are familiar with ES- she’s confirming the diagnosis I would say. If she was to refer you to Shands, then she would have to refer you as an ES patient presumably?
I would ask the ENT how many surgeries he’s done, & what the outcomes were for those surgeries. Ask how much he removes, & what he does with what’s left- it should be smoothed off & not just snapped off. You also need to try & find out what the cyst is if possible, & what implications there would be for surgery- risk of infection etc, pressing on structures, & would they be able to remove this at the same time. I know you’re probably desperate to get treated, but you need to make the right decision about surgery, so it’s worth getting a 2nd opinion, especially as you have more than one issue. If you do decide to get another opinion, have a look at the Doctors List to see if those doctors are on it, & if there are any others in your area.
As for your notes/ records, I don’t know the US system- in the UK I think we have the right to read notes & could challenge what’s written in them, although I don’t know of anyone who’s ever done it! Is that possible for you? You would hope that they were updated with your ES diagnosis & that if you had to go to the ER again you’d be able to get them to read that & see you’re genuine.
Lots of members have had digestive issues , some of which have improved with surgery, so maybe that might happen for you as well, although yours sounds like it might be quite complicated…
Surgery varies, not everyone gets kept in overnight, it seems to depend on whether a drain’s put in for swelling- you’d have to ask the surgeon about thst. There’s lots of info about what to expect after surgery you can read up on, the discussions are searchable.
I hope this helps a bit, hopefully others will have info & ideas for you too.

Yes, it helps, it helps confirm that I am scared to death of what is happening inside of me! I would like to think she would refer me as an ES patient! I feel like everyone is afraid to even TOUCH me let alone make an opinion! The “cyst” is filling back up. It starts as a horrible tasting infection which NO ONE ever finds or sees even though I tell them it is in or part of or by my tonsil! So, I taste the yucky taste but then the taste stops and I feel the cyst or infection growing. My face is not as bad as that picture, but I can feel the weight of it on collarbone and voice/throat area. Last night I had what felt like liquid go down the wrong tube and therefore I started choking and later sneezing…so, to ME it feels like maybe it is hanging down and keeping something partially open?

When they did the ultrasound for the ENT she asked if I had symptoms and I said yes because I could taste the infection and had pain…but the hugeness of the cyst was not there. It’s there now!!! I wondered about the cyst…if it is part of tonsil, ok maybe, but if not and it bursts open, then what?

I am scared to move. The pressure inside is that bad…it is such a freaky, weird feeling…

I DO want to rush to surgery but I am ABSOLUTELY scared to death!!!

Bone on L hurts with cold air, food, drink and spreads the pain like wildfire…

I didn’t come around after my appointment because I am frankly confused as to what to do. I saw the Neuro last week Monday and she said I was doing great advocating for myself and to see the ENT and go from there. I thought she said definite referral to Shands but my husband and Dad think she meant get the tonsils out first THEN Shands. The ENT doesn’t believe in ES and was very honest and forthcoming about his view. He is a great Dr. but here is where I stand. The tonsils are coming out. Both Dr.s said move forward. When he went in to feel the end of the styloid he felt the right one but the left one is very close to my jaw and he couldn’t even get to the end of it, even with me directing him with my finger like an airplane marshaller! And he STILL didn’t find it. He said my left tonsil was hard. He is about to find out just how hard because the bone goes right through it. They BOTH want me to get my tonsils out and then see if that fixes everything. I understand it is dangerous to play with bones in my body but here is my issue. ENT is saying what if it really is just tonsils and you are messing with bones and nerves and blah. He sold my husband. I’m pretty sure it is the bone I feel in my mouth 24/7. I am so conflicted I don’t know what to do. We aren’t wealthy, it’s not like I can afford to have several surgeries. I am lost. On last entry it was supposed to say I DON’T want to rush to surgery.

Please, I hope someone responds to my update. I am in a really crappy situation and I am really lost!

I’m sorry that you’re under this pressure & getting conflicting advice! It’s a very difficult situation…if you had the surgery for the tonsils, & it doesn’t fix the pain which potentially could be ES, then it’s a surgery for nothing, not only the financial aspect, but what you’re putting yiur body through. Plus if the bone is poking into your tonsil it could potentially affect healing- there may not be enough skin to knit together? One of the UK members is finding that their styloid is pushing the scar from their tonsillectomy. But if your tonsils are affected then the infection could make surgery for ES worse if it was intraoral…
Personally, if financially it’s possible, I’d want to see someone experienced with ES for a consultation & their opinion before having surgery…some doctors do phone consults so is it possible to get a more expert opinion? I know doctors like Dr Cognetti & Dr Samji do accept people’s scans & then do phone consults, hopefully other US members might give you info about that, & whether you could bypass the neurologist for her referral? There are other doctors with experience in Florida, & also Dr Nuss in Louisiana has seen several members.
Ultimately it’s your decision, it’s difficult for us as we’re not doctors, so can only give personsl opinions…thinking of you, a difficult decision.



Any doctor that is familiar w/ ES could remove your tonsils AND your styloids in one surgery. The styloids would likely be removed intraorally at that point since your throat will already be open from the tonsillectomy. There are ENT doctors who, by using several incisions in the throat, are able to remove the styloid to the skull base & also remove the stylohyoid ligments if they, too, are calcified, or to keep them from causing a future problem if they aren’t. Try to find a skull-based ENT surgeon. That is an important question to ask. As Jules noted, Dr. Samji (CA) & Dr. Cognetti (PA) do phone consults but there is a fee for that. Often, medical insurance will pay all or at least part of that charge. You should check w/ your insurance before having a phone consult though.

It’s my non-medical opinion, you should have both taken care of in one surgery. You will likely be in the hospital for at least one night & possibly more depending on how you’re doing post op. One night is typical though. Many doctors do ES surgery as an outpatient procedure. I believe tonsillectomies are also done outpatient now, too, if no complications are expected. There are a number of forum members who’ve had simultaneous tonsillectomy & styloidectomy so it’s not unheard of.

I will say a prayer you find the right doctor ASAP so you can get this situation resolved soon.


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I’m 4 weeks post tonsillectomy op! It’s horrendous but I felt I had to get them out as one was bulging and I felt all the pain was coming from it. At that time I had no knowledge of ES until after the op when the surgeon told me I have it. My tonsil was infected but capsulated, he’s not really sure why?? Anyway, I’m now glad they have been removed but still have all the pain as before and if I had known about ES prior to tonsillectomy I may have just opted for styloidectomy to see if this was what was causing tonsil pain first. I am now hoping to have the styloidectomy. Not sure if this helps you but think if you start with styloidectomy it may resolve your tonsil problems??? Good luck xxx


Did you stay in the hospital after your tonsillectomy?
I hope you get your other surgery soon

Hi Tara, yes initially I had one nights stay in hospital, but I do think I should have stayed another night as I struggled with drinking and pain medication. I ended up back in hospital a day after release to be put on a drip for dehydration. It’s not a nice operation especially when you’re a little older than the usual age for this op xx

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Dr.Alemar Weston , fl does eagles surgey. cleveland clinic near Miami. PM me. you need the right doctor. There may be one or two more in Fl who can help you.


Ok everyone, I am cancelling my tonsil surgery. I should have gone to the ER a couple nights ago but my fear of the ER is so great because of the way I have been treated in the past. The pain is again spreading down from collarbone into chest. There is infection in my face and neck as I can feel and taste it. The pocket that fills up was large but it burst yesterday. That is a pocket I believe that is formed by the bone and skin that it is pulling. I can feel bubbles going into it when I swallow. My left ear canal is now being messed with 24/7 and I can literally feel spasms in my neck and I have also been having them at my temple. My ear rings all the time now. I am having brain symptoms. I am pretty sure I have a blocked gland as well. The lump is under my tongue. The DR said he couldn’t see it! have lost 13 pounds in the last several days because the pain of swallowing is so great. My body NEVER gives up weight. I had some revelations a few nights ago about why all of my symptoms are so bad. One was that when I worked I sat directly under a huge AC vent. The last few nights I have had to sleep with a winter cap on that only has a slit for eyes. Any air from fan even is hurting my head and neck. When I worked I had headache for weeks at a time and sometimes migraine for days at a time. It all makes sense now. And of course my work didn’t believe me. I called my Neurologist and told them how sick I am and that I am having cognitive issues and they scheduled me for Nov 21!!! Crap I could be dead by then! BTW last MRI I had to make him turn the air off in the tube. It was killing me.

You know, one of the hospital ERs I went to was all the way across town. I understand ER Dr.s suspicions, but I went there because they are Dysphagia experts! Every ER visit and Dr follow up I always told people exactly where the pain was, where the feeling was, where the sickness was, all of my ER reports match I wasn’t drug seeking I was trying to find someone to take me seriously! I have some other things that make sense now but they are private and not shareable. I am disgusted with my medical community, truly.

I went to my OBGYN once and told him I had a cyst on my cervix. He laughed and said I couldn’t feel my cervix. Guess what? I had a cyst on my cervix. Different OBGYN had horrible ovary issues. He took a look inside (surgery) and said nothing looked wrong but cysts on ovary. I still had the horrible low abdominal pain. I asked him to remove the ovary. He said he didn’t think that was the problem but he removed it. Problem solved. I am not a Dr. but I am an expert on ME. Over the last 7+ years I have let my medical community make me doubt myself and what is happening to MY body. I am very, very angry. And I still need help.

I am having trigeminal nerve pain. I recently can’t remember my passwords and bill due dates and I was a spelling bee champion but I am forgetting how to spell. I have started writing things down in case something happens to me. My husband would be lost.

Today is the last day for the corn maze/pumpkin patch farm with a bunch of other fun stuff like hayrides etc. I want to take my grandson so bad but I don’t know if I can do it. That is pretty sad. I have no life. I was working and we have a boat and I do not do anything anymore because of the pain.

I have a HUGE amount of information to give a Dr. on parts of this syndrome that are private.

I looked at the Drs here in FL and I would love to see Dr. Dz at UF Shands. I sent a request for an appointment and have not received a call yet.

I am still lost, but maybe angry needs to happen to get the job done. I don’t know anymore. It is sickening to me that it is all right there on that damn CT. Guys, sometimes I feel like I am going to die.

The symptoms can get really scary I know, sounds like you’re having a tough time…I agree that it may well take getting angry to push forward, unfortunately. I hope that you’ll hear soon & get an appt. with the Florida doctor. Prayibg for you & sending you gentle hugs…

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